The Spanish Association of Orphan and Ultra Orphan Drug Laboratories (AELMHU) has submitted its comments to the Draft Bill of the Public Health Law of Cantabria.
Together with the barrier of waiting times for a diagnosis, according to the study carried out by ENSERIO (Study on the situation of the social and healthcare needs of people with rare diseases in Spain), people living with these diseases also face difficulties such as access to treatment, since 40% of patients do not have treatment or, if they do have it, it is not the right one; or a long wait to access it. On the other hand, it is worth mentioning the lack of healthcare specialization, where more than 45% of those affected said they were not satisfied with the care received and 55% of cases reported that they did not know the professional.
Thus, such a long waiting period often leads to an incremental deterioration of patients' health, which makes early detection and treatment a fundamental and determining factor.
So much so that, together with more than 30 entities from the pharmaceutical field, as well as scientific, the Association carried out in 2017 a report on Recommendations for the Search for Solutions in the field of Rare Diseases, the largest consensus document ever reached regarding the approach to rare pathologies in Spain. Among the recommendations set out in the report, emphasis is placed on implementing a Comprehensive Care model that provides a response to people with rare diseases, ensuring early diagnosis and the harmonization of expanded screening in all the Autonomous Communities.
Therefore, AELMHU welcomes that the Government of Cantabria wants to respond to the need to update and adapt within the Community of the Law 33/2011 of October 4, General Public Health with the aim of implementing the national standard in the framework of the regional singularities. Specifically, it is welcomed that the orientation of activities for the early detection of diseases, diagnosis and early treatment is included within this standard. It is a sign of the commitment of the Cantabrian Government to the promotion of health and welfare of citizens, especially those suffering from this type of minority pathologies.
After analyzing the previous public consultation, the Association considers that the consultation process prior to the drafting of the preliminary draft of the Public Health Law of Cantabria will play a relevant role in improving the quality of life of patients and some recommendations are provided below:
- To request the inclusion of as many rare diseases as possible in the neonatal screening program as a common tool for early and accessible detection, prioritizing the incorporation of all those pathologies that have a safe, effective and cost-effective screening technique and have an approved treatment included in the Basic Common Portfolio of the National Health System.
- To speed up the procedure for the inclusion of these pathologies to reach this number of 21 by 2026, thus guaranteeing rapid and equitable access to the diagnosis of diseases, while at the same time bringing this region into line with the national average.
- Promote and encourage innovation to ensure the health and well-being of citizens throughout their lives. Through this type of health policy, therapeutic advances and the research and development of new drugs can be stimulated.
- Promote public-private collaboration in improving accessibility to medicines as it has proven to be a very useful tool for improving people's quality of life.
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